Next Step: Mantle Cell NHL

Yesterday I had a blood draw and a visit at my Oncologist’s office with my practitioner nurse, Rene, who is VERY informed about my case and VERY helpful in explaining and discussing the latest information with me.

So, there’s been a change to my cancer over time, which was expected. It used to be classified a Nodal Marginal Zone, monocytoid B-cell, stage 4. That made it a slow-growing form of Non-Hodgkins Lymphoma. We managed to put that into remission twice over the years with the help of chemo (COP and then CHOP) in 2001-2002 and then 2003-2004. We also used monoclonal antigen Rituxan to kick it in the teeth.

That all worked pretty well, and I’ve been in remission now for about 8 long, terrific years without any significant problems that I’ve been aware of.

Recently, of course, my symptoms have returned and I’ve been having some medical stress that landed me in the hospital, and we’ve confirmed that its time to deal with it again, also expected.

Now that the biopsies on the extracted lymph node from my neck and the bone marrow from my pelvis have been analyzed, the team of Oncologists working my case were able to determine that it’s no longer that slow growing Marginal Zone NHL, but a more aggressive form of the disease calld Mantle Cell Lymphoma, which is still a Non-Hodgkins Lymphoma, just to be clear.

Because my cancer has changed to a more aggressive form, the treatment needs to be changed with it. The type of out-patient chemos I’d gotten in the past (about 2 hours of infusion every 3 weeks or so) will not be enough to deal with it this time, so here’s the new plan, in a nutshell:

I’ll be getting infusions that take 3 days, plus a possible 4th day for some cleanup, which will require a hospital stay each time for those durations. So, it’ll be an in-patient situation.

The drugs that will be predominantly used in these infusions are:

Methotrexate on day 1 in a continuous transfusion.

Cytarabine every 12 hours for 4 doses on days 2 and 3 by infusion.

Leucovorin Calcium by IV as a wrap-up on day 3 or 4, depending. This drug is referred to as a “Rescue Med” to help my system after the previous infusions wipe out a LOT of cells throughout my system.

That treatment regimen will begin next Tuesday, on June 19th, 2012. At 10:AM I’ll get a peripherally inserted central catheter (PICC Line) installed so that continuous infusions, IV drips, etc. can go into my body, and blood draws can come out, all without sticking me with any more needles every couple of hours (which already has my arms and hands looking like a junky again)

At 1:PM the same day, after my PICC Line installation, I’ll meet with Oncologist Dr. Erickson to go over everything again, and then be admitted into the hospital to begin my 3-4 day infusion procedure.

Before any of that can happen, I’ve got to get a MUGA test, which will determine whether my heart can provide the necessary blood flow to deal with the additional stress the infusion procedures and drugs’ actions will put on my body. That test is scheduled for tomorrow, Friday the 15th, at 1:PM.

I’ve been told to bulk up by eating anything and everything that I want and drink lots of fluids to stay hydrated. The infusion process is expected to drain me pretty much, so I need to store up some energy like a camel ahead of time to get through it easier.

That’s no problem for me since I got the first chemo (COP) treatment and started eating like a horse!

Prednisone is not a part of this treatment plan, so I’ve begun (as of last night) to ween off them by halving the dosage, which I’ll do for 3 days, then halve it again for 3 more days, then I’m done with Prednisone.

I was taking antibiotics to fight off a bit of bronchitis associated with my Chronic obstructive pulmonary disease (COPD/emphysema), but those meds ran out a couple days ago with no refills indicated on the bottle, and I don’t seem to have any more symptoms of the bronchitis, so I guess they did their job.

Lump in my neck and leg are still downsized to nearly normal, and my abdomen still feels like it’s going down as well, indicating that the first chemo de-bulking worked pretty well to put things in enough check for my spleen and liver to at least begin to return to normal size, though Nurse Rene upon examination yesterday said they’re still enlarged.

I’ve got a PET Scan coming up, but I don’t think it’s been scheduled yet. That will allow the Oncology team to get a much more detailed look at exactly where in my body the cancer cells are pooling, concentrating, how spread out they are, and all that.

On the financial side (I have no medical insurance at all, and presently no income since I finished up my last job in April after 2 and a half years on the road and came home to Michigan), we went to the Social Security Administration Office yesterday and started up the process to get me on disability. Given my disease, how long I’ve had it, the advanced and aggressive stage it’s in now, financial circumstances, etc., they said it’s pretty much a slam dunk and we’ll be seeing rapid progress on it’s approval.

Meanwhile, 5 medical bills have come in so far. I paid one off the other day, as it was only about $65 (they offered my a 50% discount on the full bill of $130 because I have no insurance, so I went for it). The others add up to a couple thousand, so I’ll start making minimal payments on those, just to keep them off my back. Soon there will be literally dozens of bills coming in from everywhere on this, adding up to as much as a couple hundred thousand to perhaps several hundred thousand dollars, and even at some pittance like $5 per bill per month just to keep them off my back and keep my treatments coming, there will be so many individuals looking for payment that it’ll amount to a couple or few hundred bucks per month, easy (been there, done that in my previous bouts with this over the years). Eventually, SS and Medicare will take over and the whole thing can be put behind me, but that will take a while (up to two years to be fully covered and out of my immediate world).

In the meantime, I have my sister Candace to help handle them all, and I just give her the money and signatures she requires to deal with it. She handles so much for me, it’s just incredible – SHE’s incredible the way she handles all this crazy stuff! I’m just not able to deal with all the forms and phone calls and emails and red tape and frustration from docs, hospitals, bill collectors, social workers, the government, and various other associated entities, and that stuff is all right up her line.

Meanwhile, I was supposed to set up a primary care physician the other day and went to the one recommended for an initial visit, but he has an office staff full of rude people who couldn’t even tell us what the cost of that day’s visit would be, so we decided not to even try to work with them at all, and will find someone else.

I think that pretty much covers things at the moment. Will update again with any new developments.

Oh yeah, the photo above is one I shot the other day, and the moth’s tongue reminds me of the PICC Line I’m about to get for the infusions. LOL!